My Family Survival Guide
Read This Survival Guide and Understand What Lupus Sufferers Go Through Each And Every Day
FOREWORD – By Jackie McFarlane
I have known Faye for over 10 years. We spent many a Saturday morning waiting for our children whilst they enjoyed their various music lessons, and the two families have become firm friends.
Our children attended the same secondary school and have now gone their various ways, but still all remain friends.
I knew that Faye had an illness called Lupus fairly early on in our friendship, although she wasn’t particularly open about it – I think she told me because she was unwell at the time.
I thought that I knew what the illness was and knew that this was the reason that Faye sometimes felt unwell.
She rarely complained, but often referred to feeling very tired and worried about the children.
More recently Faye was spending more and more time trying to ‘sort herself out’ and she also lost a lot of weight.
It was not until she asked me to help with her book that I had any idea of what she, and many other Lupus sufferers, have been through – it was a real eye-opener and I realized that I had known nothing about the disease and how it could affect people’s lives so drastically.
Faye would never have told me, or anyone else, exactly what she was experiencing as there are too many facets and her modesty and privacy would prevent her from attempting to explain – nor would she want to appear to be complaining.
The book gives a real insight into the Lupus sufferer’s daily struggles and experiences and provides so much useful information and advice, from first-hand experience, for both sufferers and their families and friends.
A sufferer cannot begin to tell you what they are experiencing, but through reading this book, anyone who has anything to do with someone suffering from Lupus will have a greater knowledge and understanding of this ‘sneaky’ disease.
This is not a medical explanation or description of the disease – it tells it how it is.
I have so much admiration for the way Faye has coped over the years and the fact that she now wants to share her experiences to help others.
So, to Lupus sufferers and their friends and families everywhere -
- Read this book and learn to live.
By Faye Cooper
I have found writing this book very therapeutic and I hope that it puts a few things into perspective, for anyone who chooses to read it, as it did for me.
One of the main things that struck me was that I hadn’t realised that my children were growing up and had become more aware of the fact that I was ill. They were worrying about all sorts of things that could have been discussed and explained.
While writing this book it became quite clear to me that Lupus was not just about me being ill, it’s about dealing with it as a family. At this point I asked my eldest daughter, Alex, to write and explain what it is like to live with a mum who has Lupus.
I knew Alex wanted to go to university, but I was not aware that she wanted to escape from the situation at home. What I had expected her to write about was that her mum is always tired and never has the energy to enjoy life with her.
During the final stages of putting the book together my second daughter, Megan, decided that she would have a read. After reading it she insisted on adding her view point of what it is like to live with a mum who has Lupus.
Although I had realised that my illness was affecting her, I hadn’t expected such honesty, so much so that it made me cry. Anyone who knows Megan will tell you that what she has written straight from the heart and explains much of the way she has acted over the last few years, especially at school.
My two younger children have yet to tell me how Lupus has affected them. I will definitely be talking to them and reassuring them over the next few months.
2 Foreword – By Jackie McFarlane
4 Preface – By Faye Cooper
6 Important Life-Changing Information That You Need To Know
Four Important “Must Know” Extracts From The Book
7 1) How To Get The Support – Of your family and friends.
8 2) Know Your Symptoms
9 3) Know The Questions – You should be asking your Rheumatologist.
10 4) Tips On How To Cope – With the relentless exhaustion.
13 My Story
21 Living with a Lupus Sufferer – ( by Alex, my eldest daughter )
24 Living with a Lupus Sufferer – ( by Megan, my second daughter )
31 What Is Lupus – SLE – Living With Lupus
32 Why Do People Develop Lupus?
32 Family Link
33 Lupus In The Elderly
33 Lupus In Men
35 Living With Lupus
35 Family And Friends
36 Laughter And Its Power
36 Suggested Activities
37 Does & Don’ts
42 Visits To Rheumatologists
44 Lupus Specialists
46 Management Of Lupus
46 Blood Tests
47 Cervical Smears – Important
47 Syphillis – Very Very Important
50 Herbal Remedies
52 Organs & Systems
52 Heart & Lungs
52 Brain & Nervous System
53 Bone Marrow
55 General Lupus Symptoms
55 Extreme Fatigue & Exhaustion
56 Joint Pain
56 Skin Rashes
58 Mouth Ulcers
58 Dry Eye & Mouth
58 High Blood Pressure
59 Double Vision
59 Thyroid Problems
59 Overlap Autoimmune Diseases
63 Lupus Flare
64 Common Symptoms Of A Lupus Flare
66 Diary Page Example
Ever looked perfectly healthy, yet felt so ill?
Ever been tired and exhausted, even after a full night’s sleep?
Ever had constant pain and stiffness in your joints?
Ever had unexplained rashes on the skin?
Ever been made to feel you are making your symptoms up?
Ever felt so depressed you hide away from those closest to you?
Ever got so stressed you couldn’t get to sleep?
Yes, would be my answer to the above. My name is Faye Cooper and I am a sufferer of Systemic Lupus Erythematosus (SLE) or Lupus for short. I am in my forties and have had the symptoms since my teenage years – I was eventually diagnosed in 2003. Getting a diagnosis wasn’t straightforward for me and caused a huge amount of stress and upset within my family and to my friends.
I decided to write this book about Lupus to help fellow sufferers.
Lupus is an extremely complex illness and can vary from being very mild, to seriously debilitating. It is also known as the ‘great mimic’ as its symptoms can be very similar to other diseases. With the symptoms being so varied and the sufferer looking so well, it can be difficult to diagnose.
I am not a doctor and have no medical qualifications. This is not a book that is meant to replace any advice your doctor has given, or to inform you of all the technicalities of the disease. It is simply a guide to help those suffering learn what to expect from the disease – reassurance that there is help out there available to you.
Important Life-Changing Information That You Need To Know
Holiday Insurance - Very Important
Be sure to include the fact that you have Lupus when taking out holiday insurance as you could end up with them refusing to pay out on medical bills for treatment abroad – people have had to sell their homes to pay what they owed in medical expenses…. and that is certainly a Life – changing Experience.
Syphilis – Embarrassingly Important
Blood tests in Lupus sufferers can come back as a “false positive” which is due to a cross-reaction of the test antibody.
It is quite common for a Lupus sufferer to have a smear test that comes back “abnormal”. This does not necessarily mean that there is going to be a serious problem.
If you have already been diagnosed with Lupus, have come off medication because the Lupus is in remission and then begun to get the symptoms of a “flare”, you should see a Rheumatologist. If the Rheumatologist does not reinstate your medications, you MUST ask why this has not been done.
Important Extracts From The Book
To Manage Your Life With Lupus
You Must Know…
Your Must Know Number 1
How To Get the Support - Of family and friends.
Have them read this journal so that they will understand what you, and other Lupus victims have to put up with every day.
Family and friends should be aware of the unpredictable pattern that the disease may follow and that it can affect the sufferer in many different ways. The sufferer needs support to overcome stress and depression, and help with pain management. Pain and tiredness can make them really bad tempered and anti-social. Friends and family will know to make allowances when this is bad.
Take along a close family member to your consultations so that they can hear what the doctor has to say about your symptoms and how important it is that you take the advice given. It could also be of benefit to pre-warn your doctor if you are struggling with a certain symptom at home, so that it can be discussed properly at your appointment.
When you are together as a family, it could be helpful to take the opportunity to ask each other how they are feeling and what aspects of life they are finding difficult. It is really important that not only the sufferer talks about it, but all members have a say. It may well be that a member has been struggling with the extra chores they are doing, or it may be that another member is frightened that you are possibly going to die and they need reassurance that things are fine.
Your Must Know Number 2
Know Your Symptoms
By keeping a record of your symptoms and taking photos of rashes and swellings to show your doctor, you will be far more confident when discussing them with him.
Due to the fact that symptoms can be so varied and seem as if they are not connected, and the fact that Rheumatologist visits are so far apart, it is very important to keep a detailed account in a notebook.
I have a notebook that has a record of the following
- Type of symptom.
- The length of time the symptom lasts.
- How bad it was by using a grading scale of 1 to 10, with 10 being the worst.
- Whether I thought there was a cause for the symptom – e.g. allergy related.
- I also note if I was feeling happy, sad or stressed.
- The dates of the symptoms.
- I keep photos of swellings and rashes in a folder on my phone to show the doctor.
Over the past few months I have been using a diary on my computer, which is especially designed for people who live with a chronic disease such as Lupus.
It allows me to enter all sorts of information such as moods, how much pain I am in and where the pain is, down to what I have eaten through the day. As the week goes along, it plots the information onto graphs which allows me to see at a glance if a pattern develops and why.
See example of diary at the end of the book.
Your Must Know Number 3
Know The Questions - you should be asking your Rheumatologist.
Here are some questions that you may find helpful to ask.
- Ask for any results that should have come back since your last visit and…
- If tests are being requested ask what type of tests and why.
- When letters are being written, ask for a copy to be sent to you so that you can keep a record of what is happening and being discussed. This is really useful when you are seeing a number of different consultants, as you are the only one seeing the whole picture, so you need a good knowledge of your health.
- If you see a junior doctor at your consultation and you feel that they are not listening to you, or they have made what you think is an incorrect decision, it is quite acceptable to ask to see the consultant there and then, rather than waiting for your next appointment.
- When you arrive at your appointment and find that you are seeing a junior doctor but you have questions that you want to ask a consultant, it is fine to ask to see the consultant. Be prepared to wait if this is the case.
- Make notes while your consultant is talking, so that anything new can be looked at later – especially if it’s a term or name that you are likely to forget after you have left the consultation.
- Don’t be afraid to ask to go over any plans or conclusions at the end of the session.
- Make sure you have a list of all the medications that you are taking, know why you are taking them and the most effective way of taking them – with food/before food; at night/first thing in the morning… Would some medication be more effective taken a few hours apart from another, or at the same time? Are they counter-productive, or are there side-effects which may mask other symptoms ?
Your Must Know Number 4
Tips on how to cope - with the relentless exhaustion.
Tiredness is very difficult to manage. Lack of exercise causes lethargy – lack of energy reduces the will to exercise. There needs to be a balance between exercise and rest. Exercise increases stamina and muscle tone, rest restores energy and aids tissue repair. Healthy tiredness with subsequent sleep should help to minimise ‘Lupus tiredness’ and ‘listening’ to the body will indicate when it is time to rest. Many sufferers with Lupus fatigue become discouraged when physicians cannot cure tiredness.
Daily routines should be adjusted so that sleep is possible if needed and, as the disease is so unpredictable, make plans that are not too rigid so that if you need to change, or cancel, it won’t be so upsetting. Learning how to deal with stressful situations by using relaxation techniques and setting realistic goals – not aiming for something too difficult – will result in feeling much better, especially if these goals are achieved.
On a good day, when cooking a meal it is a good idea to try making enough for two meals, so that one of the meals can be frozen to be used on a day when you are not feeling so well.
Plan a visit to the supermarket by making a list so that the shortest distance is walked along the aisles , with as little backtracking as possible.
Don’t be frightened to ask your friends and family to help when you are feeling exhausted. The more help you ask for, the sooner you will feel better and you won’t be worrying about the build up of chores.
Learn to pace yourself by breaking down chores into manageable steps. Don’t go over-doing it on your good days, as this will just make matters worse later.
My name is Faye and I was diagnosed with Lupus in 2003. It was a real surprise to be told I had Lupus, as I hadn’t really considered myself to be ill. I had assumed my symptoms were down to the fact that I had four children and was part of the process of getting older. When I was given the diagnosis, the Rheumatologist gave me a booklet and told me that it would tell me everything I needed to know – something I now know was completely untrue! There is so much more to Lupus than can be written in a book.
At the following appointment I was offered medication in the form of an anti-malarial drug. Due to the side-effects listed and the fact that I really didn’t think I was ill, I refused them. I think I was still in denial and didn’t really understand how ill I was.
Two years later the Rheumatologist said that my bloods were showing changes and that it was very important to start taking some medication, as my health was now at risk. I had an eye examination and was given the go-ahead to start the antimalarial medication.
I was still in denial at this point and it took several days before I plucked up the courage to take my first tablet. It made me feel really sick and this carried on until my next appointment. I was advised to take the tablet with my evening meal so that my tummy was full and if I felt sick, I would be able to sleep it off. This worked.
A few months later I was beginning to wonder if the medication was doing anything for me. I continued, as my Rheumatologist said it was important. The improvement was very slow and gradual at first. At no point did I think, “Wow, this is brilliant!” It must have taken about six months before my family and I noticed subtle changes.
The symptom I found the most difficult to deal with was the fatigue. I had four very lively young children and I couldn’t make it through the day without a two-hour nap in the afternoon. Every afternoon I would lock the doors, close the stair gate and nap on the settee. In the evenings I would be in bed, asleep, by nine o’clock and sleep until seven the next morning. On several occasions I slept through playgroup pick up times in the morning. I found that if I sat down for five minutes in the middle of the morning I would fall asleep. The fatigue was so bad it made me feel as if I was going to black out. I could also wake up feeling like this even after a good night’s sleep. Gradually I slept less each afternoon and found I could make a few days without afternoon naps and so the process carried on. I was however, still having ten hours sleep at night.
Before my Lupus diagnosis I had developed asthma and every time I caught a cold it developed into a chest infection. I soon found that I needed the inhalers less and less, until I didn’t need them at all. I had also been suffering with bad reactions to insect bites, and allergic reactions to all sorts of things. These all subsided and became quite mild and manageable.
The pains in my wrists had gone – I noticed that the swelling had subsided and the stiffness in the morning and evening stopped. In general I began to feel more active and felt happier in myself. Family life improved and I actually found that I could play with my children and do household chores. Family holidays also improved – I found I no longer got the terrible headaches and flu-like symptoms while camping.
After being diagnosed, it took me a long time to come to terms with the fact that I was ill. I had an illness that would be with me forever- there was no cure and I would need to be monitored for the rest of my life. Not yet 40 and with 4 young children, being ill was the last thing I needed.
I took the medication for about three years before my optician thought that it was affecting my eyes. I went to see the Rheumatologist and it was decided that the Lupus was in remission and that it would be fine to stop taking my medication. I was told that if I ran into any problems I would be seen promptly.
Not long after this I developed an over-active thyroid, but was unable to take the thyroid medication as I had a bad reaction to the drug. This caused me a great many problems. At the same time I began to feel very unwell. My right hip became painful, my fingers were swelling and the glands in my neck were up and down.
To have an over-active thyroid as a Lupus sufferer was something rather strange. I experienced bursts of energy and became very active. I was functioning on just four hours sleep a night, I decorated two bedrooms! I just couldn’t sit still. It was very strange feeling ill, but having to be so active.
In the end I was referred to an Endocrinologist (thyroid consultant) who said the best course of action was to have radioiodine. The radioiodine would kill the thyroid, which meant my thyroid would become underactive and be controlled with thyroxine tablets. I got the distinct feeling that this was the easiest and quickest route for the endocrinologist, as his whole attitude changed once he knew I had had a hysterectomy, (this is the easiest course of treatment, but radioiodine and pregnacy don’t mix). At first this treatment really worried me, especially as I already suffered from constant tiredness and this is one of the known side effects of an underactive thyroid. I felt it would compound my tiredness even more, despite taking the thyroxine. I was convinced that, once the bloods were within the normal range, the consultant would be happy, even if I felt ill because they were not in my normal range. Another issue I had was that I knew there was very little choice in thyroxine. This concerned me as I did not know if I would be able to tolerate the thyoroxine tablets – I was already finding I was oversensitive to a number of drugs. My Rheumatologist and Endocrinologist assured me that this would not be a problem. My last concern was that the radioiodine is radioactive and can last up to three weeks in the body. During this time I was told that I was not to have any contact with adults for one week and children for three weeks. Where was I to go – I still had four children living at home! Like before, it took a while for me to come around to the idea. My Rheumatologist told me that all my health problems were down to my over-active thyroid, so I finally agreed to have the treatment.
A week before I was due to have the radioiodine, a second set of thyroid function blood tests came back normal. The radioiodine treatment was cancelled and my bloods were monitored.
As I said earlier, I had been taken off my Lupus medication. From here on things are a little hazy as I became very ill. I was exhausted most of the time, I became quite dizzy and my temperature would rise very high, resulting in me staying in bed for two or three days at a time. My body was swelling up and down and so were the glands in my neck. My joints were very hot and stiff in the morning and evening with joint pain flitting from one joint to another. I lost two stones in weight in three months because I felt sick and had lost my appetite. My IBS (irritable bowel syndrome ) symptoms began to get worse and I developed GERD (gastroesophageal reflux disease) . A strange rash with a distinctive raised ring developed on my hand, which was very painful.
There was worse still to come. I became very depressed and anxious. Basically, I began to hide away from my family and spend lots of time in bed. I just shut myself off from life. My children became very upset and my husband became extremely stressed.
My Rheumatology appointments at this time were eight months apart – it hadn’t crossed my mind to ask for an earlier appointment. At my next visit I woke up feeling surprisingly quite well. I went along to the hospital, showed my strange rash and explained all my symptoms. An appointment was made for me to see a Dermatologist for the rash and also a Gastroenterologist because my Rheumatologist thought they could feel a mass in my bowel. No treatment was offered for my Lupus and I never thought to ask why.
By the time I got an appointment to see the dermatologist, the rash had completely gone. I now wish I had taken a photo of the rash. My trip to the Gastroenterologist resulted in being told the mass in my bowel was not a mass and it was put down to constipation.
Still the symptoms continued to rule my life on a day-to-day basis. I was now in pain all over my body and my muscles ached constantly. Parts of my limbs were going numb and I had pins and needles in both my lower arms. As a result of the pain I was getting very little sleep at night. However I looked the picture of health. My doctor tried to treat me for depression, with very little success.
I asked my doctor to write to the Rheumatologist to see if I could go back on the antimalarial treatment. At this point my Rheumatologist decided I had Fibromyalgia. I couldn’t go back on the antimalarial, as it wouldn’t be the correct form of treatment. I struggled on for a further few weeks until I realised I just couldn’t cope and requested another appointment. Again I listed all my symptoms including the fact that I was now getting blisters on the roof of my mouth. Again I was told it was Fibromyalgia … so still no treatment for my Lupus.
I finally reached breaking point and could not take feeling so ill any longer. I researched the internet and invested in a lot of up-to-date information books. During this research I came across some very interesting information, which explained a health problem I had had to deal with straight after the birth of my second child. Having had ‘women’s problems’ for some weeks after the birth, a whole batch of tests were carried out. This included a syphilis test. Well, it came back positive and what a shock that was ! I argued with the doctor for quite a while saying that it couldn’t be possible, I knew my husband wouldn’t have passed it to me. The doctor told me the test results were never wrong. I went home feeling dreadful and very worried – what would my husband say? Would he think I had been unfaithful? I am a very lucky lady as my husband is very loving and supportive. We sat and talked about it. What a relief it was that he felt the same way as I did.
I have never found out how this result came about, or what caused it. I can only assume that it was a ‘trick’ of the Lupus itself.
With the help and support of my husband, we decided that the best way forward was to pay for a private consultation with a Lupus specialist as my illness was preventing me from having any quality of life and was also causing stress and upset within my family. I requested all my hospital notes, which I was charged for, to see if I could find an explanation as to why I wasn’t being treated for Lupus. I could see nothing in my notes that was obvious to me what the problem was, so I made a private appointment to see a Lupus specialist.
The specialist gave me a thorough examination and agreed that I needed to go back on the antimalarial. He believed that I had Lupus and also Sjogren’s Syndrome as a secondary illness. The Sjogren’s was diagnosed by a bone-dry Schirmer test and dry mouth. The specialist wrote to my GP with his findings and I restarted the antimalarial, much to my relief.
I finally had a diagnosis that I was happy with and agreed with my 2003 diagnosis, having thought it was all in my head because no doctor had ever agreed with another over my condition. When you’re told you have a lifelong illness, relief is the last emotion you’d expect to feel. I had been through so much that I felt I could treat this as a new start.
A couple of months later I went to have a check up with the Rheumatologist, who was cross with the fact I had restarted the antimalarial. It was as if I had questioned her clinical judgement by getting a second opinion, which to some extent I had. I was asked if I had any improvement with my symptoms. I was honest and told her that, as yet, I hadn’t, but that I would be continuing with the Lupus medication. She basically said that I probably wouldn’t see any improvement, as my symptoms were all down to Fibromyalgia. She wouldn’t even discuss the Sjogren’s symptoms.
Since that appointment my symptoms began to improve slowly. With the help of the following medications; antimalarial, a low dose tricyclic antidepressant to help with pain and aid a good sleep pattern, antihistamine for when my allergies are bad, acid inhibitor for GERD, lubricants for my eyes, paracetamol, and a tens machine to help with pain. I also began a gentle exercise program that includes a steady walk each day and exercises provided by my physiotherapist. My sleep pattern improved noticeably. The glands in my neck stopped swelling up and down and the stiffness, flitting joint pain & swelling have virtually gone. The numbness and pins & needles have disappeared. The very high temperatures leading to two or three days being stuck in bed, have stopped.
Some time passed before I decided to raise a complaint about why my Lupus had not been treated. The reply was that my Rheumatologist stood by the Fibromyalgia diagnosis and that, as my bloods were normal and she hadn’t seen any of my symptoms, I hadn’t had a Lupus flare. It also came to light during this investigation that my Rheumatologist had “attempted to organise cognitive behavioural therapy” (CBT) and the reply to this was “The referral was assessed but unfortunately, it was felt that you did not meet the criteria for CBT treatment” due to the fact that only sufferers with mental health problems are treated.
Three and a half years later I am getting my life back on track and I have just started treatment for an underactive thyroid. When I went to collect the first thyroid medication prescription from my local chemist, she came out to chat with me and said she had been wondering how long it would be before they treated me for an underactive thyroid. She thought it would have been sooner. She also told me that I would feel so much better once the medication got into my system. My chemist has given me so much support and advice about how and when to take my medication and when a problem has arisen she has been very happy to chat and liaise with my doctor.
This has been a great help and a very unexpected area of support, so if you have a local chemist, I really recommend that you use them, as they have so much information and will give time to discuss medication and other associated problems.
For the whole of the time I have been ill, I have looked the picture of health, but felt terrible. As I already had a diagnosis of Lupus, it never crossed my mind that they my Rheumatologist wouldn’t believe the symptoms I had and would think that I was making it all up. I also learnt a very valuable lesson. When I am ill, I must question and discuss with the doctor treating me, why a certain treatment plan is being followed.
Living with a Lupus Sufferer – ( by Alex, my eldest daughter )
When my mother first proposed the idea of writing this book some years prior to it actually being written, I never expected it to go anywhere. The idea soon left her and nothing more was ever said. Then all of a sudden the book was on the agenda again and I got roped into helping.
My earliest memory of my mother being ill was ‘the tablet’. Every evening she would ask me to get her ‘tablet’ from the cupboard and would take it with a glass of water. As a young teenager I didn’t question why, or what the medication was for, I just did as I was asked. Nor did I question when she stopped taking the medication.
My real memories are from this point onwards, as it was quite clear there was something different about my mother. She became increasingly active and rather embarrassing at times. Bursts of energy meant sudden dancing in the living room. She did a lot of housework and generally seemed more “alive”.
After trips to the doctors she was diagnosed with having an over-active thyroid, something quite unusual for a Lupus sufferer to have. Though she felt more energetic and active, an over-active thyroid could potentially be dangerous, so treatment was needed. Radioiodine was suggested. I remember my mother being very concerned about this and doing lots of internet research, which probably just made things worse. She finally agreed to the treatment, but it was cancelled due to her blood results coming back as ‘normal’.
From here on it was doctor’s appointment after doctor’s appointment, after doctor’s appointment. Depression kicked in , she was extremely stressed and grew increasingly more annoyed with the way she was being treated at both the hospital and the local doctors’ surgery. She was put on numerous medications, including anti-depressants.
I remember her still being awake late at night when I returned home from a night out with my friends. This was very unusual for my mother – it was clear she was finding it difficult to sleep. She kept insisting on going out for walks, just anything to keep her mind off the actual problem.
During this time she also lost her appetite and wouldn’t eat evening meals with the rest of us. A sudden loss in weight was very noticeable. By now the situation was at its worst. My younger sister grew increasingly disruptive at school, which didn’t help my mother. My dad was unhappy at work and as a family we generally got more and more wound up with each other. I couldn’t wait to go to university.
I left to go to university and refused to return home until the Christmas holidays. I made as little effort as possible to visit, just to avoid confrontation and an argument. Whilst away, I got a message from my mother telling me she had been diagnosed with Fibromyalgia. I “Googled” this term straight away and told my mother that this was definitely not what she had. None of the symptoms seemed to match. I knew her symptoms and this diagnosis was wrong.
I agreed to go to the hospital with her on several occasions, the most memorable being sat in the hospital waiting room for hours and hours waiting for her to have a colonoscopy. Stress and a bad memory meant she didn’t always take in what the doctors said to her, having another person in the room meant they could remember it for her.
My mother reached breaking point and decided to pay to see a Lupus Specialist in London. She prepared herself fully by collecting all her medical records and writing down all her problems. The specialist gave her the answers she needed – he believed her symptoms and reassured her. I could see she was relieved to have a diagnosis that she believed in.
Her next trip to the hospital wasn’t so happy though. Her Rheumatologist was less than impressed that her clinical judgement had been questioned and that the specialist had put her back on ‘the tablet’. I went to this appointment with my mother and could see how unhelpful this woman had been in treating her.
After a while things settled in the family and my mother was getting on the track to recovery. Now confident with her diagnosis, she started talking on the internet to people with the same and similar conditions. She even occasionally sees these people. I met one of these women once – she was so charismatic, a woman full of life and happiness, a true ‘hippy’ you could say. You could tell, however, that she was in a lot of pain and was suffering considerably, not just with Lupus but many other conditions too.
To some extent I think my mother benefits from talking to people in a similar situation. We sometimes joke that she spends more time on internet forums than with us, but it is part of her way of coming to terms with things and coping on a day-to-day basis. To look at her now you would have no idea that she is ill, she looks perfectly well. She hasn’t really regained the weight she lost and now wears her original wedding ring because her hands aren’t swollen.
Obviously with no cure, this condition will always be in the background, but we know what we’re dealing with now and will take the bad days as they come.
Living with a Lupus Sufferer – ( by Megan, my second daughter )
Hello my name is Megan and I feel you should also read my view, as it is different from everyone else’s that we have had so far.
I am not sure if Lupus is a disease or a condition, but it is monstrously nasty and I am very angry that my mother has been unlucky enough to have it.
Nobody really has a clue what happens to the body, or why – not the doctors, not the sufferer and not the family members. If I am honest, I could have done research to find out for myself, but it is very upsetting and I find it much easier to block it out, as did my mum probably.
I am now 18 years old – the first point at which I can remember finding the Lupus an issue would be 4 or 5 years ago, maybe because as a young child I was less aware of my obvious surroundings.
Mum sleeps a lot – lots and lots, and always has done. I also sleep a lot more than usual for a person of my age, any time after 9 o’clock and I am shattered. My friends are well aware that if they text me after this time, they are not going to receive a sociable reply. I partly blame this on being sent to bed so ridiculously early as a young child, more than likely because my mum wanted to go to sleep herself.
I don’t know why, but I have kept a holiday photo of us all in the exact same-style jumper and I remember it as a time when we were very happy as a family. I’m not sure what was going on Lupus -wise at that point, but something inside says I should mention it.
My mum has had lots of different medications over the years, with the first one being “the tablet” which each of her four children used to fetch for her from the cupboard, along with a pint-glass of water in the evening. This was often accompanied by “combing Mum’s hair”- not sure of the medical relevance of that, but it was a quiet way of being close to your mum. Mum often got angry because we are very lively children and any person looking after all four of us would get very tired, let alone if they were ill on top of that.
I believe that me and Mum have much more in common personality-wise than anyone ever realises from reading her story bit of this book. I can relate to not wanting to admit illness and start taking medication.
Whenever we wanted attention as children, I would be very annoyed to find my mother had gone to sleep upstairs. We would have to be quiet on Sunday afternoons so she could sleep, when we really wanted to go on a bike ride, or go to the park. I very often get tired and sometimes little things pop into my head which make me think it is a sign that I have Lupus. This does scare me slightly as I know it is hereditary and I really can’t imagine the fatigue and muscle pain fitting into my life at all. My mum used to do lots of swimming and things, so I can’t really see how it has become part of her life either.
Lupus is like some sort of rude, enemy invasion and is very frustrating. I don’t think everything is down to Lupus because I have been told about 10 different big names for what my mother has. I don’t know what to trust or accept as fact because we have been told so many different stories.
When I was once asked at school what it actually was that my mum had, my first response was “everything”. It is very hard to describe what’s happening at home, so all you can say is my mum is “ill”. How do you talk about something if nobody fully understands what is going on, or why? No one believes you mind, when one of your friend’s mum has breast cancer, your own mum is pretty much disregarded as an issue and that is unfair.
Secondary school was a problem. The idea was that it was the ideal place to take out all the anger I had about my mum’s Lupus and let loose because she was not there to get upset or hurt.
This was not the case, as they often rang her up even though my form tutor kind of knew we had a situation. What stupid people! As a teenager, seeing that trauma in your mum’s face is incredibly upsetting. I believed she was going to die. I also believed it was my fault for causing her so much stress. When you have a close relative with a disease like this, I think the most important thing that you need is someone to sit you down in McDonald’s and tell you that your mum will be fine.
I did eventually get this, I am glad to say, and things did improve. However once you get in that much trouble at school, it turns into a vicious circle which is incredibly difficult to get out of. On the other hand, I want to make it clear that I am not blaming my bad behaviour on my mother, or her illness, in any way at all.
If I’m honest, I may have been very annoyed at how life at home was panning out, but the true, most common cause of getting in trouble was because I got a buzz out of doing risky things. I enjoyed winding up the teachers I hated, I believed I had much more important things to do than go to lessons. Often teachers interpreted petty things and then blew them out of proportion – I was hostile to people trying to help and sometimes what I saw as a game of wit, turned out that I would lose and be sent to isolation as punishment.
Anyway, back to the point. My definite favourite time of Mum being ill was when she had an over active thyroid. If only there wasn’t the risk of heart failure, we could have happily lived with that mum for ages! She would do random “WACKY“ dances (hahaha) and she would blurt out random comments which were not appropriate at all. We had so much fun with her for those few months, it was such a laugh, but at the same time it’s not right.
I have a friend whose mum is an alcoholic, and living with a mum like that long-term does have repercussions, as I’ve seen. I remember getting up in the middle of the night and finding my mum awake in the living room and thinking how very odd that was. I did sit with her from time to time at night, which I thought was quite nice, but obviously not the norm.
I went with her to see one doctor once at the local hospital. This woman was absolutely awful to Mum and needed a smack in the mouth! She did not discuss with my mum how she had been feeling or anything, it was literally 5 minutes of her talking at my mum, telling her big medical terms of what she had. Not what I would consider a “caring professional”. She was intimidating, egotistical and looked down at the both of us – I really do hope that not everyone my mum saw was like that to her.
I don’t like all of the drugs Mum has been put on at all, not one bit. If it was down to me, I would take her off them and be happy with herbal remedies or something. The side-effects to me seem to outweigh the benefits sometimes. I remember being told about the radioiodine and I did not like that idea either, mainly because it sounded scary.
When things were bad, my older sister talked about “CLEARING OFF” to university and leaving us. My solution was to join every possible club – music centres, netball, table tennis, inter-form events, Taekwondo, more music and anything that meant I was out of the house for as long as possible. Very selfish I know, but we all seemed better apart from each other to avoid fighting. I have since felt guilty that my little sister misses out, because everybody disappears. At times I have wanted to act as the mother figure to her, because I know the most about her and Mum was usually asleep. I do feel my little sister has hardly any understanding of what goes on Lupus-wise but I am very glad of this. Unless she has hidden concerns in her head, I don’t think we should worry her with all of the problems because she seems blissfully ignorant of them, and quite happy. I would like to leave her this way.
Mum has lost a lot of weight because she stopped eating. I have noticed this but can’t remember her being much bigger if I’m honest. I got irritated by this as she would make a meal but then sit and not eat with us. Two crispbreads do not make a meal! I don’t know why this bothered me so much, because I don’t especially abide by three meals a day, but it did. Also she tried to sneak off into her bedroom at 7 or 8 pm, so she wasn’t downstairs with us. This also made me angry at first. I even used to follow her to annoy her! It doesn’t bother me at all now, as we are very independent people and it works out fine because I will come back from Taekwondo or orchestra and she will be there reading a book, so I can go and tell her about my day. She is very good at listening and in the last year has helped with lots of issues I have had in my life, whereas before, I used to keep them locked in my head, because I believed she had far too much to deal with in her own head.
Depression. My mum is said to have experienced / is experiencing it. I know an awful lot about depression and all of the ‘head stuff’ because I study it at school. Although having the knowledge is nothing like real life at all, I do have understanding.
My best friend likes to self harm and to attempt suicide. If I didn’t have Mum’s point of view on this, I would be nowhere. Counselling, I think, is good for them both and hopefully it can all be sorted out.
We were hardly ever allowed friends round and I wasn’t allowed the big 18th birthday party I wanted because “Mum can’t cope with all those people”. This really irritates sometimes but you have to accept that sometimes she can cope, sometimes she can’t. The days that she can, watch out for all of the vacuuming and mountains of clothes being ironed! You have to learn to catch the right mood.
I also believe Mum is making a great deal more effort with life now and hope that she is feeling better able to do this, instead of forcing herself for us. We should do so much more to help her because she does deserve it.
I remember Mum visiting the specialist in London and thinking whoever they were, they probably did a very good job. I also remember the big purple rash on Mum’s neck, which obviously made her very attractive (sarcasm,) I have a faint memory of being told that “Mum can’t sit in the sun because something inside her will ‘eat up’ her organs.” This was when I was very young, but I can’t remember it being a problem when we went to Spain, so something must have helped or ‘cured’ it.
The joint pain thing is something I will learn about when I start my physiotherapy course at university. Mum did do exercises to help with her hip and I remember going through these with her. It was actually quite good fun watching her on the floor, trying to move her leg out. Hopefully one day I will be able to really help with all of these problems for her.
We often make fun of her when she goes to sleep, but this is probably because we don’t understand. She spends far, far, far too much time talking to fellow Lupus friends that she has found on the internet and her laptop has become her 5th child. You have to laugh it off really because that’s all you can do, instead of letting it get to you or building up into a major worry or argument.
At the moment, we seem to be in a good place. Everyone seems reasonably happy, although we could do with some more money. Mum has found lots of ways to cope with the day-to-day problems of the Lupus, be it writing a diary, talking to other Lupus people, joining Lupus associations and most of all, she seems to have a deep understanding and control over her own treatment.
What Is Lupus – SLE?
• Why Do People Develop Lupus?
• Family Link
• Lupus In The Elderly
• Lupus In Men
Systemic Lupus Erythematosus…
There are several kinds of Lupus, with Discoid Lupus and Systemic Lupus Erythematosus (SLE) being the most common forms. Discoid Lupus only affects the skin where as SLE involves the joints and, potentially, internal organs. Both are incurable diseases that can be managed with medication and lifestyle choices.
Lupus comes from the Latin word for ‘wolf.’ It can cause a raised, red rash across the cheeks and nose, which was originally thought to resemble the face of a wolf, it is also called the ‘butterfly rash.’ The rash, however, is normally only present in approximately half the people with Lupus. These days it is rarely seen due to modern treatments and use of make up.
Lupus is an autoimmune condition and is treated by a Rheumatologist, who may ask other specialists for help if other organs and systems become involved. Lupus is a disease in which the immune system becomes over-active. The immune system begins to produce too many antibodies and, if left untreated, will begin to attack itself – the immune system incorrectly recognizes its self-substances as a foreign body. When the antibodies begin to attack themselves no organ or system in the body is safe.
Lupus affects nine times more women than men, with it usually becoming active between the ages of 15 and 40. It is thought that sex hormones play an important part, as the female hormone, Oestrogen, has a big impact on the working of the immune system and is thought to heighten the immune response, whereas the male hormone, Testosterone, is known to do the opposite. Children may also develop Lupus. Higher incidences occur in the West Indies, the Far East, Africa and the Mediterranean countries. It is not so common in people in regions of less sunshine.
Why do people develop Lupus?
The cause of Lupus is still not known. The medical profession does not know why Lupus exists and so they are only able to treat the symptoms rather than find a cure. Many factors have to be taken into consideration as to the triggers of Lupus. It is thought that any of the following environmental factors from the list below can trigger Lupus:
- Previous infections
- Inherited genes
- Prescription drugs
- Chemicals In The Environment
This disease is not infectious or contagious, so is not passed from person to person. If the sufferer has one autoimmune condition then they are more prone to another. Having Lupus combined with another autoimmune disease can quite often mean the Lupus will be less severe, meaning a less powerful drug can be used to treat it.
Lupus sufferers often have family members who have other autoimmune conditions such as Scleroderma, Sjogren’s, Raynaud’s, Diabetes, MS and Thyroid problems. Most studies show that about one in twenty people with Lupus will have a close relative with Lupus. It is uncommon for people who have Lupus to pass it down to their children because the child is only inheriting half the genes from the infected parent. In addition, the child may not come into contact with environmental factors to make the Lupus become active. Babies may be born with neonatal Lupus which, if this happens, only lasts for a few months as the baby destroys the antibodies from the mother and does not make any more itself. It does not necessarily mean they will suffer with Lupus in the future.
Lupus in the elderly
Individuals diagnosed after the age of fifty tend to have milder symptoms and a better prognosis than those who are diagnosed at a younger age. It is quite often the case that Lupus, when present in the older age group, tends to cause more organ damage rather than just general symptoms, but it is not known why. It could be due to the Lupus, Lupus treatment or the natural ageing process.
Lupus in Men
It may be the case that Lupus takes longer to be diagnosed in men as they often leave it longer before seeking medical help. Even then, doctors do not always consider Lupus as a diagnosis as it is not common in men.
Men with Lupus do not have more female hormones or less male hormones. The drugs that they are taking may make them infertile, not the Lupus itself. Men tend to suffer with the same symptoms as women and are treated with the same medications to bring the Lupus under control.
Society has put high expectations on men to support their families by working. This can cause emotional stress. Men are less likely to seek support from self-help groups, especially if the groups are predominantly full of women. Informal one-to-one chats are more likely to help the sufferer cope with the condition.
Living With Lupus
• Living With Lupus
• Family And Friends
• Laughter And Its Power
• Suggested Activities
• Does & Don’ts
Living with Lupus
For the majority of sufferers mild symptoms are all they have to contend with, so making small changes in life style helps them to enjoy a happy and full life. If they have difficult days then they have to learn how to cope so that next time they experience one they know what to do. It may help to find a friend who they know will lift their spirits, or immerse themselves in their favourite activity. They should not dwell on it, as this can make them feel worse.
Family and friends
Family and friends should be aware of the unpredictable pattern that the disease may follow and that it can affect the sufferer in many different ways. The sufferer needs support to overcome stress and depression, and help with pain management. Pain and tiredness can make them really bad tempered and anti-social. Friends and family will know to make allowances for them when this is bad.
Depression and irritability play an important part in Lupus. The sufferer can feel depressed for a variety of reasons. In many cases the depression and irritability can dramatically improve after the Lupus has been treated successfully.
Depression could be due to the fact that the sufferer is living with the severe fatigue, constant joint and muscle pain and other symptoms. Emotional distress due to cognitive difficulties, memory loss, changes in appearance and hair loss can add to the physical pain already being experienced. Even the medication can affect how they are feeling.
Simply coming to terms with living with a life-long disease is not easy. Many Lupus sufferers have to make sacrifices and have limitations in what they can do. The uncertainty and the unpredictable nature of the disease does not help matters. Lupus sufferers can also find that living with the illness can place a strain on family and friends.
Laughter and its Power
Laughter is a good medicine – and it ‘s free ! People will enjoy being around you, leading to closer relationships with family members and solid friendships that last through the good and bad times. Laughter helps the body in so many different ways – physically, by releasing endorphins, which help relieve pain for up to 45 minutes afterwards. The body then relaxes, which in turn relieves the physical symptoms of stress. Blood flow increases and this reduces the risk of cardiovascular problems, while energy levels also show an increase.
Tiredness is very difficult to manage. Lack of exercise causes lethargy – lack of energy reduces the will to exercise. There needs to be a balance between exercise and rest. Exercise increases stamina and muscle tone, rest restores energy and aids tissue repair. Healthy tiredness with subsequent sleep should help to minimise ‘Lupus tiredness’ and ‘listening’ to the body will indicate when it is time to rest.
Activities to improve stamina but not to subject stress to the joints:
- Tai chi
Find new hobbies if you are unable to carry on with old hobbies due to health problems.
Be Positive about Life -Do’s and Don’ts
Sufferers should learn as much as possible about the disease from a reliable source and learn how to pace themselves, especially how to rest when needed. Quite often the sufferer gets little or no empathy when feeling ill and they may find many people are sceptical and view them as lazy. Lupus is not a well-known illness, so many people have no idea what the illness is and how it affects the sufferer. Many Lupus sufferers look very well and have no obvious physical signs of the illness, even though they may be suffering considerably inside.
Dealing with how they feel about their illness and how other people respond to them can be a difficult and relentless challenge leading to fear, anxiety and depression. They should avoid people who may make them feel low, especially when they are feeling a bit down already.
Daily routines should be adjusted so that sleep is possible if needed and, as the disease is so unpredictable, make plans that are not too rigid. Learning how to deal with stressful situations by using relaxation techniques and setting realistic goals – not aiming for something too difficult -will help them to feel much better, especially if these goals are achieved.
On a good day, when cooking a meal it is an idea to try making enough for two meals, so that one of the meals can be frozen for a day when not feeling so well.
Plan a visit to the supermarket by making a list so that the shortest distance is walked along the aisles , with as little backtracking as possible.
Fatigue and physical exhaustion can lead to a sufferer requiring a lot of sleep. There are, however, times when a Lupus sufferer will find it difficult to sleep. This could be due to medications such as corticosteriods or just down to pain, stress, anxiety or the worry of being ill.
Trying to establish an evening routine that does not involve too much brain activity can help prepare for a good night’s sleep. Avoiding drinks that are known to stimulate the brain, such as coffee, ( try a hot milky drink or a herbal drink with known sleep-enhancing properties), or having a warm bath with essential oils such as lavender or camomile about an hour before going to bed, helps the body to relax if stress is the cause of the insomnia.
During the day the sufferer should try to have some form of gentle exercise so that their body feels naturally tired.
Being too hot in bed can make it difficult to sleep. Keep the room cool and have some fresh air flowing through. Invest in a good quality mattress, the best that can be afforded, as this will be more comfortable and the quality of sleep will be improved. Having the radio on a calming radio station, or listening to some gentle music as you fall asleep may help. Some radios can be put on a timer so that they automatically switch off at a certain time.
Having a book nearby to read if falling asleep is difficult can help focus a stressed or over-active brain, as can keeping a notebook and pen by the bed to jot down anything that comes to mind to eliminate the worry of forgetting. This can be especially helpful when anxious or stressed.
Some people may find it difficult to get a job, especially if they have to declare health problems on a form. This may lead to the employer looking up the condition in an old textbook, which may show a very depressing picture. If the employer is not happy with the situation, then the sufferer should ask to supply a letter from their doctor stating how well they are. Some employers are really supportive and may even arrange for the sufferer to have a place where they can go and have a rest. The employer may adjust the sufferers hours so that they are workable for both parties.
• Visits To Rheumatologists
• Lupus Specialists
Doctors find it very difficult to diagnose Lupus as symptoms can be very similar to other conditions such as Multiple Sclerosis, Muscular Dystrophy and ME. Symptoms can also be very nondescript and mild over a long period of time. Many sufferers look extremely well and healthy and may not show positive blood results for signs of Lupus, so it is difficult to convince the doctor that they are ill.
When a diagnosis is made, most sufferers are relieved as they may have doubted themselves that the symptoms really existed. They may have thought that it was all in their mind, or have been accused of being a hypochondriac by their doctor. Getting a diagnosis confirms that they really are ill and will be taken seriously.
While the disease is continuing undiagnosed, the immune system can attack the organs of the body without the sufferer knowing. This can be extremely dangerous if left untreated.
Many doctors use the ACR criteria (American College of Rheumatology) to help diagnose Lupus. For a sufferer to be able to take part in clinical trials they need to have experienced four out of the eleven criteria, not necessarily all at the same time.
Lupus sufferers are looked after by Rheumatologists and the following specialists become involved when complications arise:
- Renal experts
It is really important that sufferers have regular urine, bloods and blood pressure check-ups so that the doctors can keep an eye on what is happening. This way treatment can start before the problem becomes worse. These check ups will be for life. Routine check ups in the UK are normally about every six months and will become more frequent when having a flare.
Visits to the Rheumatologist
On the first visit to the Rheumatologist the sufferer will be asked lots of questions about their past health and family health. There will also be a physical examination and further tests such as bloods, bone density tests, x-rays and lung function tests. There may well be other tests depending on symptoms.
Before future appointments it is important for the sufferer to take a few moments to sit down and make notes, or write down questions, about what has been bothering them, listing any new symptoms so that they don’t forget to mention them. This should be done a few days before so that they can think about what is most important, which in turn will help make the best use of the time with the doctor. Generally, the doctor leads with the questions and sufferers sometimes forget to ask their own – coming away feeling they haven’t got all the information they wanted, which can be frustrating, especially if the next appointment is in eight months time.
A specialist nurse, if available, may be able to help with any concerns. Often the nurse will have more time to listen and empathise, and may suggest telling the doctor something the sufferer thought was not important.
Here are some questions that you may find helpful to ask;
• Ask for any results that should have come back since your last visit…
• If tests are being requested ask what type of tests and why.
• When letters are being written ask for a copy to be sent to you so that you can keep a record of what is happening and being discussed. This is really useful when you are seeing different consultants as you are the only one seeing the whole picture, so you need a good knowledge of your health.
• If you see a junior doctor at your consultation and you feel that they are not listening to you, or they have made what you think is an incorrect decision, it is quite acceptable to ask to see the consultant there and then, rather than waiting for your next appointment.
• When you arrive at your appointment and find that you are seeing a junior doctor but you have questions that you want to ask a consultant, it is fine to ask to see the consultant. Be prepared to wait if this is the case.
• If the sufferer has already been diagnosed with Lupus, has come off medication because the Lupus is in remission and then begins to get the symptoms of a flare, they should see a Rheumatologist. If the Rheumatologist does not reinstate their medications , they need to be sure to ask why this has not been done.
Although the majority of sufferers are looked after by a Rheumatologist, it has become clear to me that not all Rheumatologists know everything they need to know about Lupus and that it can be more beneficial to see a Lupus specialist who sees and treats Lupus sufferers every day.
If they are feeling ill, it is no help to be told that it is all in their mind, they are depressed or have any other problem the doctor may suggest. They need to be persistent and keep going back until they feel better – they are the only one who knows just how ill they feel.
Management of Lupus
• Management Of Lupus
• Blood Tests
• Cervical Smears – Important
• Syphilis – Very Very Important
Management of Lupus
There is no cure for Lupus but with the help of modern medicines and medical supervision, sufferers can expect to have a normal life span.
Many people have very mild symptoms and live life to the full. There will be times when the disease quietens or goes into remission and they feel well. New symptoms can develop at any time and may vary from week to week.
The course of Lupus is unpredictable and so needs to be monitored regularly through blood tests and physical checks, so that new symptoms can be treated quickly to prevent attacks on the body and organs. With rare exceptions all organs can repair themselves when the disease is brought under control.
Doctors diagnose Lupus by carrying out blood tests and looking at the physical symptoms of the sufferer. General blood tests include:
• Full Blood Count – to check for low platelet count, low white blood cell count, and anaemia.
• ESR test – A raised ESR (Erythrocyte Sedimentation Rate), a condition where a sufferer makes too many red blood cells, can indicate inflammation.
• Renal function tests – to check the albumin and creatinine levels. Low albumin and high creatinine levels could indicate renal problems.
• Liver function tests are carried out to check drug or liver enzyme toxicity.
• A raised CRP (c-reactive protein ) can indicate inflammation. DNA ( deoxyribonucleic acid ), ANA ( antinuclear antibodies ), ENA (extractable nuclear antigens) tests are diagnostics for Lupus and Sjogren’s syndrome.
• Anticardiolipin antibodies/Lupus Anticoagulant blood tests to indicate antiphospholipid syndrome (APS or ‘sticky blood syndrome’) which causes blood clots/thromboses .
Unfortunately blood tests are sometimes inconclusive.
It is quite common for a Lupus sufferer to have a smear test that comes back abnormal . This does not necessarily mean that there is going to be a serious problem.
Blood tests in Lupus sufferers can come back as a false positive which is due to a cross- reaction of the test antibody.
• Herbal Remedies
The treatment required depends on how severe the Lupus is and what organs are involved. There is no cure and no ‘one treatment suits all’.
The sufferer must ask why they are taking the medication and follow the instructions correctly. If they don’t, the medication may not work and so may cause more complications. It is also important that they are aware of all the risks involved with the drug they are taking so that they know when they are having a problem with the drug, as opposed to the illness. They must also make sure they have all the check-ups required with the drugs they are taking, so that any problems that may develop can be monitored.
Take care with penicillin, Septrim and sulphonamides (often prescribed for urinary tract infections) as Lupus sufferers are known to respond negatively to these drugs. In general, medication is used to reduce the activity of the immune system. Care must be taken as Lupus sufferers may find some medications can become allergens.
The main types of drugs used in the treatment of Lupus are:
- Non-steroids: anti-inflammatory drugs are used for sufferers who have joint and muscle pain.
- Anti-Malarial drugs: these help sufferers with skin and joint problems and help reduce tiredness. These drugs are used to help avoid steroid use.
- Steroids are used for inflammation and to suppress active disease. Side-effects are very common with these drugs.
- Immunosuppressants are used when the disease is severe. Regular blood tests need to be carried out when these drugs are used.
Here are a few ideas to help the Lupus sufferer, but please discuss with a doctor before taking. Also please be aware that products containing immune-boosting properties can trigger a’ Flare’, as the body’s immune system is already over-active.
- Liquorice Root and Ginseng to help support adrenal function
- Chelidonium + taraxcum to help support liver function
- Echinacea for colds and flu, but not for the long term as it has immune stimulating properties
- Probiotics to help aid digestion
• Organs & Systems
• Heart & Lungs
• Brain & Nervous System
• Bone Marrow
Organs and Systems within the body
Lupus sufferers tend to find that if one of the body’s systems is under attack, it is unlikely to attack another system. For example, if a sufferer has kidney problems then they are unlikely to develop central nervous system Lupus or Lupus in the lungs.
When it comes to the Lupus attacking major organs, the gut, pancreas, liver and spleen are rarely attacked. Any other organ is likely to be susceptible though.
Heart and Lungs
The disease sometimes directly targets the heart and lungs by causing inflammation of the tissue around them. This may then lead to pleurisy and pericarditis, which causes chest pain. Sufferers may develop a cough, difficulty with breathing and, on the rare occasion, a build up of large amounts of fluid in the lungs , which then need to be drained. Women in their forties with Lupus are fifty times more at risk of having a heart attack and stroke compared to those in the same age-group who do not have Lupus. It is not known why Lupus sufferers are more at risk. Smoking in Lupus sufferers is actively discouraged as this will increase the chance of a heart attack.
Inflammation of the kidneys is common and may happen at any time to about one third of Lupus sufferers, so it is very important to have regular check-ups. In severe cases, serious damage may be caused. Blood clotting can also damage the kidneys. Having regular checks using a dipstick can show if there is protein, or blood present in the urine. Regular blood pressure checks are important as high blood pressure can be a sign of kidney problems.
Brain and Nervous System
One in three people with Lupus suffer from migraines and headaches, triggered either by the disease itself affecting a susceptible area of the brain, or by the stress associated with the disease.
The nervous system may also be affected, causing fits which can be one of the most troubling neurological symptoms. Fewer than five percent of Lupus sufferers have fits.
Peripheral nervous system problems can cause numbness, tingling and weakness in the limbs. In some cases it can affect speech, which can make the sufferer embarrassed when in company.
The memory can be affected, varying from not remembering small things, such as what you went to the shop for, to severe memory loss. It is thought that this is part of having antiphospholipid syndrome (sticky blood).
Lupus Psychosis is a condition where sufferers become disturbed and hear voices, suffer from paranoia and see visions. This is frightening both for sufferers and their carers.
The blood flow through the skin can become sluggish if the proteins for Antiphospholipid Syndrome (sticky blood) are present. This is more common in people who have the mottled colouring to the skin, Livedo Reticularis. If this is the case, then they may experience blood clots and so may need to take some sort of blood- thinning medication. Anaemia is also a common problem in Lupus sufferers.
When the bone marrow is affected, this may cause anaemia or a reduction in the white blood cells which help the blood to clot. Lymph glands may also swell and become uncomfortable.
General Lupus Symptoms
- General Lupus Symptoms
- Fatigue & Exhaustion
- Joint Pain
- Skin Rashes
- Mouth Ulcers
- Dry Eye & Mouth
- High Blood Pressure
- Double Vision
- Thyroid Problems
- Overlap Autoimmune Diseases
General Lupus Symptoms
Often symptoms can go back as far as the sufferer’s teen years. The list below highlights possible early symptoms that could point to Lupus:
- Dry eyes or mouth
- Rashes (face or elsewhere)
- Dry Schirmer’s test (eyes)
- Teenage migraine
- Teenage “growing pains”
- Teenage glandular fever
- Finger flexing difficulty
- Severe reaction to insect bites
- Recurrent miscarriages
- Family history of immune system illness
General symptoms can be experienced at any time and for varying periods of time. It is common for symptoms to come and go during the sufferer’s life and for them not to suffer from more than one at a time.
Extreme Fatigue and Exhaustion
Extreme fatigue and exhaustion may well be the hardest factor to cope with, as these can take over the sufferer’s life and limit them in what they are able to achieve. They can wake up after a good night’s sleep feeling exhausted, which then causes a struggle with the day’s activities and leads to them needing an afternoon nap. The tiredness may be so great and their head ‘ feels so heavy’, that they are unable to function.
Feeling sick and loss of appetite can come and go for periods of time, potentially leading to weight loss.
A lot of sufferers will complain of flu- like symptoms, such as fevers and general aches and pains. These can come on very suddenly, only last for a day or two and then completely go again. Glands will become swollen for no apparent reason.
Lupus sufferers often experience fevers in excess of 39 degrees and it is very important to be checked out by a Doctor each time to rule out any chance of infection. Taking a blood sample and measuring the C-Reactive Protein does this. If the CRP level is normal then the fever is due solely to the Lupus disease activity. If the CRP is high then that means an infection is present and will need to be treated.
Joint pains are quite often the first symptom. Over ninety percent of sufferers with Lupus develop joint pain in the small bones of the fingers and feet, sometimes accompanied with swelling in these areas. The pain can move from one joint to another and back quite quickly. In the morning they may feel a little stiff as they get out of bed and for a short period of time while they start to move about. This may also happen when the sufferer has been immobile for a period of time, for example while watching the T.V. Like the morning stiffness, it improves with moving about. Lupus does not usually cause damage or deformity to the joint, as the smooth surface is not worn away. One in twenty people may develop more severe pain. It is also very common to have muscle and tendon pain.
Rashes are quite common and can become worse when exposed to sunlight. The skin rash across the face can come and go, depending on how active the Lupus is. The rashes can vary from pinkish discolouration, through to small pinpoint blood spots (purpura) and blisters. These may develop on the elbows, palms, soles of the feet and the V-neck area.
About sixty percent of Lupus sufferers experience sun-induced rashes, and between ten and twenty percent complain of other sun-induced problems. The sun can also make the Lupus become active on the internal organs. Sufferers may not be aware of the damage being done, so it is important that all Lupus sufferers protect themselves from the sun to help prevent further complications. New problems can take over a week to present themselves after exposure to sunlight. A good quality, high -factor sun cream can help, ( in the UK this can be obtained on prescription). Taking care about how much time is spent in the sun , keeping covered up and wearing a sun hat with a large brim will also be beneficial.
Some Lupus sufferers have a bluish, mottled, netting pattern on the skin (most frequently on the thighs, knees and upper arms) which always looks worse when it is cold . The name given to this is Livedo Reticularis.
Lupus sufferers often have a history of allergic reactions to drugs such as penicillin and septrin. Allergic reactions due to contact with the skin and severe reaction to insect bites can be a problem. This seems to come and go depending on how active the Lupus is.
Some Lupus sufferers do appear to be sensitive/allergic to some foods and alcohol, and the only way to sort this is by trial and error. Keeping a record of the bad days and what has been eaten will help to find the specific food that is having an adverse effect. Alfalfa sprouts in concentrated forms (food supplements) can increase inflammation in some sufferers. Vegetables from the Nightshade family, including tomatoes, potatoes, tobacco and peppers contain excessive amounts of solanins, which are problematic to Lupus sufferers when eaten, or used in larger amounts.
The symptoms of an allergic reaction can vary from sufferer to sufferer, from being a simple rash, to joint pain, digestive pain, swelling and inducing a Lupus flare.
Mouth ulcers may appear in groups and come back again and again, especially when the Lupus is active. Good oral hygiene is really important – cleaning with a soft toothbrush and flossing will help. Smoking will not help improve matters, so giving up would be the sensible course to take. The ulcers are usually found in the roof of the mouth and on the tongue.
Dry eyes and Dry Mouth
Sjogren’s syndrome can occur in one in ten people with Lupus and is usually milder in Lupus sufferers than non-sufferers. Sjogren’s syndrome is where the immune system attacks the glands that produce lubrication, mainly to the eyes and mouth. Artificial tears and artificial saliva help. ( *Make sure the saliva is sugar free as dry mouths are more prone to tooth decay.) Sjogren’s syndrome may, in some cases, cause dryness of the vagina and so intercourse is painful. The use of gels and creams can help in these cases.
Hair loss is quite common and can be intermittent – the hair will re-grow once a flare is brought back under control. If this is not the case, these days there are plenty of fashionable alternatives.
High blood pressure
High blood pressure can also occur, especially if there are kidney problems or steroid use. This can be treated quite effectively with drugs to suppress the immune system, or with blood pressure tablets.
The tendons in the hands can become inflamed, which causes the fingers to stay bent and difficult to straighten. It can also cause the thumb to lock in the “hitch-hiker’s” position.
Recurrent miscarriages can be due to high levels of a particular type of antibody known as Antiphospholipid (sticky blood). This can be particularly distressing for women who want a family.
Inflammation of the nerve that supplies one or more of the muscles to the eye can cause double vision in some circumstances.
About one in ten people may suffer from an autoimmune disease that affects the thyroid gland. Lupus is more likely to make the thyroid underactive and only occasionally over-active. When a person develops an over-active thyroid gland the eyeballs may be prominent and double vision may occur.
Overlap Autoimmune Diseases
Unfortunately it is very common to have more than one autoimmune disease. The following diseases are the most common to appear alongside with Lupus:
• Thyroid disease
• Sjogren’s Syndrome
• Raynaud’s phenomenon
• Antiphospholipid syndrome
It is thought that no specific diet helps in Lupus. Eating plenty of fresh vegetables and foods low in fat can help. Noni juice is high in potassium and so is not recommended for people who suffer from kidney and heart problems, but is beneficial for some. Eat a well balanced diet with foods high in Omega 3.
Smoking is thought to stimulate the immune system and make the Lupus more severe, so it is actively discouraged.
Avoid exposure to direct sunlight and fluorescent lights.
Going away on holiday is generally thought to be safe, but it is recommended that the sufferer should avoid live vaccines if on high doses of steroids or immunosuppressants.
The Mira coil ( progesterone only) is a good contraceptive to use after pregnancy, as it releases very small amounts of progesterone into the body – safer for Lupus sufferers.
Lupus tends to calm down after the menopause and become less severe. Women with Lupus are more likely to go through the menopause up to five years earlier. It is thought that the oestrogen in hormone replacement therapy does not have the same effect as the pill, due to the fact that the natural oestrogen level has fallen during the menopause and so it is the deficit which is being replaced. It has also been found that those women who have a hysterectomy for other medical reasons experience an improvement in the Lupus symptoms.
How To Identify A Lupus Flare
• Lupus Flare
• Common Symptoms Of A Lupus Flare
A Lupus’ flare’ is a sudden change/increase in disease activity. Sometimes there is no obvious reason for the flare, but any of the following may be a trigger:
- Changes to lifestyle
- Severe emotional stress
- Ultraviolet light
- Strong medications
- Exposure to sunlight
- Physical stress
- Exposure to oestrogens such as the combined (or conjugated) oral contraceptive – (do not stop taking this without consulting your doctor).
The length of time to suffer from a Lupus flare varies from person to person – a flare can last from a few days to a few years. During a flare Lupus sufferers should make sure they have plenty of rest.
Some women find that their Lupus symptoms are worse just before menstruating.
Common symptoms of a Lupus Flare
Loss of appetite, nausea, being sick and weight loss can be early signs of a flare.
Other signs of the onset of a flare may include:
- Feeling weak
- Swollen lymph glands
- Running a low temperature
- Joint and muscle pain
- Developing mouth ulcers
It is also quite common for the skin to break out in hives for no apparent reason. Once treatment has commenced and the Lupus is back under control the symptoms settle back down again. A flare left untreated can last from several days to many weeks and the sufferer may become progressively more unwell. Each sufferer’s flare will show different symptoms and range from being very mild, to severe and debilitating.
Putting all this information together and then seeing it in its complete form, made me aware that I have been through so much and survived medical problems by sheer luck, and that as a family we were not really talking and coping with the problems that arose from my ill health.
Had I had this information twenty years ago, I know we would have handled things differently. I have been very fortunate that I have a close family and we have survived problems that could have been catastrophic had that not been so.
I hope that by reading this and considering how those around you are coping with your illness, you will be happier and under much less stress than you would otherwise have been.
Medical advances with Lupus may be on the horizon - but our problems are today!
BARON-FAUSTAND Rita, BUYON Jill, The Autoimmune Connection – Essential Information For Women on Diagnosis, Treatment And Getting on with Your Life, The McGraw-Hill Companies, 2003.
HOLDEN Triona, HUGHES Graham, Talking about Lupus – What to do and how to cope, Piatkus Books Ltd, 2004.
HUGHES Graham, The London Lupus Centre- A sufferers guide, Current Medicine Group, 2008.
HUGHES Graham, The London Lupus Centre A sufferers’ Guide to Lupus.
ISENBERG David, MANZI Susan, Lupus the facts (second edition), Oxford University Press, 1999.
LATHITA R. G, PHILLIPS R. H, Lupus Everything You Need to Know, Avery Publishing Group, 1998.
Arthritis Research Campaign www.arc.org.uk
VARIOUS, Coping and Living with Lupus, Lancashire and Cheshire Lupus Group.